First Christmas at home

We had a bit of drama in the run-up to Christmas when Jessica had croup one night and we called an ambulance as she was really struggling to breathe and her sats were dropping.  Thankfully it was short-lived and her sats had picked back up by the time the paramedics arrived but we ended up blue-lighting in to hospital where Jessica was given a dose of steroids which helped sort things out.  By lunchtime we were all back home again, and Jessica has been fine ever since (just a little bit of a cold at the moment).   One of her front top teeth has now finally made an appearance (although another molar came through first!) so she now has five teeth and has been sleeping better since the second molar appeared.  She is also getting more confident with standing up and has now worked out how to sit back down again!

Jessica has thoroughly enjoyed her first Christmas at home (as have we all!) and it was so lovely to be able to take her to the Christmas service at church this morning.  She has had so many presents and lots of lovely toys, clothes and books and enjoyed spending the day with Grandma and Grandad who also spent Christmas Day with us.  Favourite presents so far are the stacking cups that Santa left in her Christmas stocking, a talking nursery rhyme book and a toy piano from Mummy and Daddy.   Jessica loved unwrapping the presents although it was very slow at times as every time she tore a tiny piece of wrapping paper off she handed it to Mummy or Daddy to put in the bin!  She wasn’t too impressed about wearing a paper hat for Christmas dinner and whilst she enjoyed the turkey, most of the Brussels sprouts ended up on the floor!

 

Overall, it has been a very lovely day and a much nicer Christmas than last year (although everyone in the hospital made it as nice as it could have possibly been, it just isn’t the same as being at home!)

Hope everyone has had  a lovely Christmas too and peace and blessings to you all for the year ahead. 

What a difference a year makes...

This time last year was one of the longest days of our lives as Jessica spent eleven hours in theatre having her Norwood procedure and first attempt at the Glenn procedure.   Looking at her this morning, laughing and chatting away and seeing the Christmas tree at home for the first time, we feel very, very blessed that our little miracle is here and thriving and we are able to look forward to our first Christmas at home as a family.   A huge thank you to the surgical team and all the wonderful doctors and nurses on PICU and Ocean Ward for helping to get Jessica where she is now, not to mention all the support and prayers from all our wonderful friends and family and everyone who has been following Jessica’s journey.

We had a recent check-up at Wexham Park Hospital and all was well.  Jessica now weighs 8800g (19lb 6oz) and is 73.6cm tall.  Her sats have been in the mid-80s recently which is great and she continues to be as happy and smiley as ever.  She has been teething again – looks like the top two teeth will be making an appearance shortly (all she wants for Christmas are her two front teeth!)

She has been to another Christmas party – this time organised by Friends of PICU and had a lovely time there.  Michael and Louise have been busy rehearsing over the past few weeks for a fundraising concert in aid of Friends of PICU which will be on 19^th January 2013 at Christ Church in Uxbridge – tickets are available from the church office – click here for more details.

We have one more Christmas party to go this weekend and then will be looking forward to Christmas at home.  Merry Christmas to everyone who has been following us this year – God bless you all.

A couple of firsts

The past weekend has seen a couple of firsts.  Jessica attended her first Christmas party on Sunday and got to see Father Christmas (although not for the first time as he visited Southampton General Hospital a couple of times last year!). The Christmas party was organised by the Alexander Devine Children’s Hospice service for children with life-threatening and life-limiting conditions (our lovely community nurse Lucy is an Alexander’s nurse) and the theme was Charlie and the Chocolate Factory.  There were actors performing a very short version of the story and keeping the children entertained throughout plus lots of activities.  Jessica loved the soft play and sensory areas  and the ball pond.  She had such a fabulous time – a huge thank you to the Alexander Devine Children’s Hospice service for organising such a wonderful party.   

Jessica also stood up for the first time on Sunday (which prompted Daddy to lower the cot again!) and since then has been practising this new skill by pulling herself up on tables, sofas and her little bookcase.  The only problem with this is that whilst she has worked out how to stand, she is not quite sure how to get back down again and so gets a bit upset at being ‘stuck’!

We’ve been waiting for more teeth for quite some time and thought the top front teeth (the next ones that usually come through after the bottom two) were about to make an appearance.  It was quite a surprise when we realised that one of her top molars has come through – we were expecting a few more teeth before one of those appeared but Jessica clearly likes to do things her own way.  It does explain why we’ve had quite so many disturbed nights with teething recently though…!

 

We had another appointment at King Edward VII Hospital for an eye check-up.  Jessica’s squint still alternates between her left and right eyes and we have been told that this is a positive thing as it means her vision is not particularly impaired as a result of the squint.  The plan at the moment is to keep an eye on it (no pun intended), and go back in three months with the aim of trying glasses in about six months’ time to see if this helps correct it.

As always, Jessica continues to be a little bundle of joy and is really starting to chat much more now.  It is lovely to see her sitting playing with her toys chatting away to herself and she now picks up her teddy bears (her favourite toys) and says “Aaahhhh” whilst hugging them which is very cute.  She also says “bear”, “baby”, “na-ma” (Grandma) and we have also had a “men” at the end of bedtime prayers!

We have a couple more Christmas parties to attend in the next couple of weeks and a check-up with the paediatrician at Wexham Park so will update again before Christmas.

Crawling, colds and a cardiac check-up

Jessica is now properly crawling and managing to get around quite quickly – if Mummy leaves the room for a minute, Jessica soon comes to find out where Mummy has gone so it is time to get out the stair-gates and start trying to baby-proof other rooms in the house!  She knows exactly which toys she wants to play with and now heads off to get them if we haven’t already taken them out of the toy-box for her!  She will also point to her head or hair if we ask her where her head/hair is and has worked out how to turn the TV on and off!

She has had a cold over the last couple of weeks and with the cold weather, there has been the occasional moment where her colour is a little bluer than it has been but her sats are in the low 80s which is fine – we have been told that as long as her sats are above 78, we should not be concerned; any lower and she should go into hospital for some oxygen.  

Jessica had her check-up at Oxford yesterday and all was reassuring on the echocardiogram – there is good blood flow through the left pulmonary artery and aorta which were the two vessels which were ballooned when she had her cardiac catheter last month.  She is now weighing in at 8600g (18lb 15oz) and her length is 72cm so she is growing nicely and starting to get into 9-12 month clothes.

Jessica has enjoyed time visiting Nanny and her aunties, uncles and cousins and having Auntie Maxine and cousin Kieran come to stay for a few days.  She also had her first ride on the tube as we took a trip to Oxford Street so see the Nokia window display that Daddy had been busy installing in Selfridge’s.   Nanny has now come to stay for a couple of days and play with Jessica which they are both enjoying very much!

We are due to have another eye check-up at Windsor at the beginning of December and then an appointment with the paediatrician at Wexham Park the following week.   Our next appointment at Oxford won’t be until February – now that she is doing so well, the check-ups are really spacing out.

Crawling, signing and socialising

 Over the last couple of weeks, Jessica has become increasingly mobile and is now quite adept at crawling commando-style across the floor – she particularly likes to get herself underneath our coffee table and computer chair which is fine until she sits up and bumps her head!  She isn’t quite yet pulling herself up on the furniture and trying to stand, but she can hold her weight on her legs briefly when held in a standing position and can also balance whilst sitting on her rocking horse, which she loves.

She has also been adding more words to her signing vocabulary – for a long time, milk was the only word that she signed, but now she will sign ‘daddy’, ‘more’ and ‘all gone’.  She also says ‘goo-ger’ which we think is Jessica-speak for ‘good girl’ given the amount of times we use this phrase each day!

Jessica’s sats continue to be in the high-80s and the community nurse has dropped the frequency of her visits from fortnightly to monthly as Jessica is doing so well – this time last year, the community nurse was visiting twice a week – what a difference a year makes!  Jessica continues to gain weight beautifully – she now weighs in at 8225g (18lb 2oz) and has moved up to the 9^th centile for weight.   She had her flu jab yesterday and was very brave – just a few tears when the injection was given and all smiles again within a couple of minutes.

Our little social butterfly continues to get out and about and enjoy being with people.  Over the last couple of weeks we have been away on the church family weekend, had another mini road-trip finding a few more Olympic gold postboxes (now up to 36 in total – 23 more to go!), helped Grandad celebrate his birthday by going out for a meal and had a visit from cousin Meryl. 

 It is such a joy to see how well Jessica is getting on and watch her discovering more and more each day.  We are due to have another check-up in Oxford on 16 November – hopefully all will continue to be well.

Home again

By Wednesday morning, Jessica was off the oxygen and almost back to being her usual happy self again.  There was good blood flow through the pulmonary arteries and aorta seen on echo and so we were able to go home.

Jessica has been doing well since we’ve been home – lovely and smiley as always and enjoying playing with her toys.  Her weight is now up to 8040g (17lb 11oz) so she is gaining weight beautifully.  Her little wounds from the catheter are all healing well and we are enjoying the fact that for the first time since she was born, we are all having time at home together without having a very clear idea of when the next trip back to hospital will be (other than routine check-ups!)

Ballooning blood vessels

We are back on Ocean Ward again – Jessica has had her cardiac catheter procedure and all has gone well.  All the nurses on the ward have commented on how much Jessica has grown since we were last here (five months ago – what a lovely long time we have had at home between hospital stays!) and how well Jessica looks.  She has been such a brave girl throughout the whole thing – other than being a bit unhappy about having bloods taken yesterday (not a fun process in spite of the magic cream) and feeling quite sorry for herself after coming out of theatre today (not too surprising!) she has mostly been her usual happy self.  Now that she is a big girl, she even has a sticker chart which is gradually filling up due to all the different tests that she has needed to undergo.

Other than all the tests needed in preparation for today’s catheter, Jessica spent yesterday quite happily playing with toys on a floor mat near her cot and giving all the nurses and Sue, the chaplain, big smiles when they came in.  We were second on the list this morning although were a little later getting to theatre than anticipated so lots of distraction was needed to take Jessica’s mind off the fact that she was not able to have any breakfast.

The catheter was being performed by Dr Wilson (the doctor who did Jessica’s very first operation before she was born).  It was a long wait whilst Jessica was in theatre – four hours in total, mostly due to the fact that there were difficulties getting the catheter into the veins, particularly the veins in Jessica’s neck which means that she now looks a little like she has been attacked by vampires, bless her!  There was some narrowing in her pulmonary arteries and aorta which has been ballooned and this should help improve the blood flow in these areas.  Jessica was a little bit wheezy when she first came out of theatre as she has a little bit of a cold but this improved soon after she arrived back on the ward.

 

Jessica has been recovering well – within minutes of getting back to the ward, she made it clear that she was hungry and then proceeded to make up for the missed feeds by having a lovely long feed from Mummy followed by a big bottle of Infatrini!  She got another certificate for being a brave girl and has mostly spent the evening snuggling up to Mummy and Daddy as she is understandably not quite as happy as she was this morning!  She has needed a little bit of oxygen to help boost her saturation levels whilst she is recovering but hopefully by morning she will be back to just breathing air again. 

Thank you to everyone for keeping us in your thoughts and prayers – hopefully all being well, we will be able to go home again tomorrow.